adventures in family, faith, and Down syndrome

Advocacy #20: Can we please stop with the 92%??

by Maggie on October 20, 2015

I apologize in advance for striking a nerve maybe. But also maybe not.

This is the last time that I will reference this topic here on Yo Soy La Lay.

There is a statistic often shared in our community, most especially by new parents, who seem to have “chosen the unthinkable” by going through with a Down syndrome pregnancy. The statistic is that 92% of women abort their babies when they find out that it has Down syndrome. Yes, I even (sort of) referenced it back in the “early days.”

Let’s just get this out of the way first: Is this a valid stat? Well, no, not exactly. It is based on a 1999 comprehensive study of other mostly European studies done between 1980 and 1998. It also only accounts for those with a prenatal diagnosis (because clearly, those of us without the testing didn’t terminate). A more recent study (2011) of a variety of international studies found that the termination rate is 65-85% and varies tremendously based on maternal age/race/ethnicity and other factors. See the full abstract here. That number still doesn’t give any indication of how many babies are born with a birth diagnosis. We really don’t have a solid number on how many babies overall are diagnosed versus how many are terminated.

Beyond the whole issue with the statistic not actually being true, can we talk for one moment about the implications of centering our advocacy efforts around whether or not people have abortions?

Bear with my terrible analogy here. Imagine you are trying to pick a restaurant for dinner. Looking through reviews, you see that 92% of people would not recommend eating at the local Dutch restaurant. You can see that a couple people are raving about it, saying it’s the best meal they ever ate, but overall, the vast majority, 92%, insist that this is just not a good restaurant to try out. They haven’t tried it, but someone they know told them it might make you sick, it’s overpriced, or it’ll ruin your ability to enjoy a nice movie afterward because you’ll feel so miserable. Likely, upon seeing that, you are going to do one of two things: you’re going to avoid that restaurant altogether or if you decide to dine there anyway, you’re heading into it with quite a bit of fear about whether you’re going to end up with food poisoning or a nasty waiter.

Do you catch my drift?

Look, I am all in favor of lowering the number of abortions, period. Does that statistic (even the realistic one) cause me pain? Yes, of course. It infuriates me. But, I think it is important to choose our brand of advocacy carefully. And my preference is to advocate for the relevance of the lives of people with disabilities through knowledge about what our (very mundane) life is actually like.

You will never convince someone not to have an abortion by telling them that they are a horrible person or a baby killer or a sinner or that they are cruel and heartless. You convince people with love, with facts, with hope, with information, with resources, with options, with a real understanding of life.

I understand the conversation started by the statistic. I respect the conversation. It’s just not a conversation that I choose as a central theme in my advocacy efforts. We all advocate differently…. that conversation is not my way.